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Recently Diagnosed--What To Do First??


franziska
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Hi!

This is my first post. I was diagnosed with POTS last month and just now found this forum, which is so exciting because no one I know has any clue what POTS is!

I've spent some time reading the forum here and there is a lot of information! My doctor recommended some treatments to me, which seem to be pretty common:

-midodrine (10mg 3xdaily), florinef (0.1mg a day)

-compression socks

-tons of water

-exercise [weight training (legs only, supine positions only) and light cardio (walking, at the most~)

My question is this:

It seems that there are SO many different methods of treatment, which is completely overwhelming. How did YOU decide on what treatment area to focus on first? For example, I'm not quite sure my meds are working for me and I want to look into possibly upping them, changing them, etc. But I also want to start exercising, which means researching a whole bunch on exercise for people with POTS. But I also want to focus on changing my diet to include less carbs! There are many areas to focus on, and I need ideas and anecdotes on how different people chose what to target at the beginning. POTS treatment seems to work best when a lot of small bits come together in unison. I know the easy answer would be "whatever is most important to you!" but to be honest, I am so overwhelmed that I need some direction! :) :)

Bonus: I am incredibly, undoubtably lucky in that my local, in-network health care clinic is the Mayo Clinic in Rochester. If anyone is familiar, I saw Dr. Osborn in the Heart rhythms clinic. Any suggestions/recommendations/advice on Mayo-specific treatment is very welcome

Thank you new friends! :wub::wub:

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Hi franziska,

Welcome to our community! I have a migraine so I'll be short for now, but one thing my POTS neuro taught me is to only change one thing at a time. That way you know if it's helping or making things worse or it is causing any side effects. It makes trying new things take longer but at least you can keep track of what's doing what. I'll try to get back with more info later.

Katie

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Welcome Franziska! I think Katy is right, Especially when looking at medications. But, it seems everyone needs the extra water/fluids and salt (unless hyper pots with the salt) . It is easy to get overwhelmed so just take it a step at a time and make sure to get plenty of rest as well. Welcome aboard!

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Welcome franziska! I know how you must be feeling, it seems like there are so many things to get sorted when you're newly diagnosed you just don't know where to start. Like the others have said, it's probably best to take one thing at a time. I would think you could start by definitely making sure you are drinking enough fluids every day. About changing your diet, maybe you could just start off by changing one meal every day to include less carbs, until you get the hang of it more. I found it really hard to decide what kind of exercise to do when I was diagnosed, but I started off just doing a little walk every day, like walking to the end of my road and back and gradually built up from there.

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Hi franziska, welcome to DINET! Re exercizing, I do think it's very important. I have been trying the Levine exercise protocol but found out that it isn't for me. Well at least I gave it a try. I'm back to working on walking now. Hope you'll find our forum helpful, personally I think we have a fantastic group of people who understand, are empathic and always willing to listen!

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Hi franziska, I'm also newly diagnosed and it can definitely be overwhelming. I've found these forums to have a lot of great information. I have a family member with POTS as well, so I did go into this with a little knowledge. However, I'm learning that what works well for one person might not work for another. My dad and I have many different symptoms and require different treatments. My Neuro just referred me to a cardiac rehab program that is going to help develop an exercise plan suited for me. I'm excited to try this because like you mentioned it's important to find excercises we can tolerate. Also, like others have mentioned, drinking enough fluids is very helpful. Getting enough sleep seems to help too. Hope this helps some!

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franziska, welcome! To add to the previous posts, I would suggest establishing a schedule and measuring out your basic daily needs first. If I had to do it all over again, I would have measured out my water for each day, definitely my salt for each day, and work with a dietitian to ensure you get the right nutrients at the right time of day. This was hard for me because I was never a schedule-minded person, but since we with POTS have to help our nervous systems to regulate, I find I have to adhere to a schedule pretty strictly now. I started working with a dietitian a 1.5 years into POTS, and my water and salt intake were not consistent at that time but I came close to my goals. But, my medications and condition over all improve when I learned to consistently meet those basic goals. Sleep is another big one - I can't say I practice getting good sleep all of the time, because I'm a mom, but when I have a few days' worth of substandard sleep, I tend to feel it and sometimes REALLY feel it. Also beware of reducing carbs in your diet on your own. I have read that a ketogenic diet can bring on or exacerbate hypotension (if I can find the article again I'll post it), and having worked with a dietitian now, I would never attempt a diet change on my own - I would leave that to a qualified dietitian. Food can be your medicine if done correctly. Best of luck!

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I agree with the recommendation to trial a single medication at a time. For many of us, our symptoms are up and down, and it can take some time to know how helpful (or not) something is. This illness requires patience. You can get dizzy chasing your tail.

Do your best to manage your emotions in all of this. I had a hard time accepting this, and the roller coaster made it worse. I am learning to accept this and to try staying level headed. I tend to do better when I am doing better, if that makes any sense. There is only so much we can control, but we can make it worse.

Avoid comparing your situation to any one else's situation. We all have a lot in common, but we are all very different.

Make a couple friends that have this, and that you can relate with. That is particularly helpful if they are generally positive. It is hard to be positive all of the time, but the negativity can become a burden all of it's own.

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